Endo appt next week?...: Having had really 'bad... - Thyroid UK

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Endo appt next week?...

Linkypie profile image
8 Replies

Having had really 'bad' blood tests - haven't got the exact figures but was told by GP that my TSH level was 99! Have been referred to an Endo at Kettering General Hospital and have my first appointment next week - what should I expect?

Also got issues with my BP and diabetes levels but GP wouldn't deal with any of those till I see the endo. (Was referred about 5 weeks ago.)

Is everything linked to my thyroid....Or are they just fobbing me off?

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8 Replies
Fruitandnutcase profile image
Fruitandnutcase

Well, I would say don't expect much and you won't be disappointed if the whole visit feels a bit 'flat'.

You will probably get booked in - I image in a similar way to when you attend a diabetic clinic. I was weighed, height measured, had by BP taken, no one wanted the urine sample I had been told to take and after that I went out to wait my turn.

Hopefully you will see a thyroid specialist rather than a diabetic specialist.

I was hyper (Graves) - not the same as you - so the doctor I saw explained how they would be treating me, I asked him a few questions, he gave me a note of my blood test results and that was it! Out I went! It all felt very flat.

I would take a notebook with you. Write down any questions you have, anything you want the doc to know - use bullet points and keep things brief. I had a column in my little book with headings ready to write my test results in although I also got them later on as print outs from my GP.

I just think it is good to let your specialist see that you have been reading about your condition and you are intending being a partner in your treatment.

Don't know whether or not you have browsed the thyroiduk.org.uk site yet so if you haven't have a look on there, it's very good.

Clutter profile image
Clutter

Linkypie, Has your GP prescribed Levothyroxine?

TSH 99 is very high, certainly high enough to raise BP, glucose and cholesterol which will usually fall when optimally medicated with thyroid replacement.

At my endo consults height and weight are measured before I go in, blood levels are reviewed and dose adjusted if required, symptoms discussed, pulse sometimes taken, throat and neck examined as I'm a thyCa patient, and I'm given a bloods request form to have tests prior to next consultation.

Make a list of medication and doses, and supplements and doses you take in case the endo needs to review them, and bullet point a list of symptoms/questions you want to discuss with the endo.

shaws profile image
shawsAdministrator

I'm sorry you have hypothyroidism, diagnosed by your very high TSH. I hope you see an Endocrinologist soon and that he is sympathetic and knowledgeable.

Yes, our thyroid hormones are required by everything in our body and everything is interconnected.

With hypo you will have a low pulse and temp. There are about 300 clinical symptoms and your GP probably referred you due to your other illnesses.

My TSH was 100 but I'm fine now thanks to Thyroiduk.org.uk (before this forum was instigated). So it's good we can go online and ask or answer questions.

Your blood pressure and stomach issues can be due to hypo. Stomach issues can be due to low acid as hypo means slow and therefore although the symptoms of low acid are so similar to high acid many GPs prescribe Proton Pump Inhibitors for high acid when instead we maybe should be taking either Betaine with Pepsin or a Pure Apple Cider Vinegar mixed with water or juice at each meal, particularly if we've eaten protein.

It is difficult to predict what Endos will suggest but you can report back and let us know how you get on and what he suggests. Usually it is levothyroxine and a blood test about every six to eight weeks with a rise in levothyroxine (thyroid hormones) until you feel well or TSH is around 1. Also ask for Vitamin B12, Vit D, iron, ferritin and folate to be tested as we are usually deficient in these.

It's a big learning curve as it's best to be knowledgeable although we do expect the doctors to inform us of the way forward.

When having a blood test in future make it the earliest possible, and fast (you can drink water). Allow about 24 hours from your last dose of levo and the blood test and take it afterwards. Always get a print-out of your blood test results with the ranges for your own records and so that you can post them if you have a query.

Many people recover their health with levothyroxine but it can take a while when you're TSH is so high.

Regards

Linkypie profile image
Linkypie

I'm on 300mcg of thyroxine daily now.....the specialist I'm seeing is a diabetes specialist as well so we'll just have to see.

shaws profile image
shawsAdministrator in reply toLinkypie

I was prescribed 25mcg to start and it should have been 50mcg really. Your 300mcg seems quite a start as usually it is lower at first and gradually increased. How are you feeling?

Jazzw profile image
Jazzw in reply toshaws

I see from a previous post Linky's been hypo for at least 15 years, was put on T3 then taken off it by a daft Endo... :(

healthunlocked.com/thyroidu......

I can't believe he thought antidepressants were the answer. Makes you despair, really.

shaws profile image
shawsAdministrator in reply toJazzw

They seem unaware that T3 can also be used as an anti-depressant in those who dont have a problem with their thyroid gland. The Endo is treating the symptom and not providing the optimum of thyroid hormones our needs.

Why is their such a struggle to get thyroid hormones which suit the patient and not the inflexibility of the BTA guidelines who believe they know best and the patient has a less than healthy and fruitful life.

In actual fact because they are not scientists they know less about liothyronine and it's effect on our bodies. The make false statements too.

Jazzw profile image
Jazzw in reply toLinkypie

Linky, at least one of the "endos" at Kettering is good. My OH managed to get a prescription for T3. :) Regular readers here will know that's a good sign...

PM me if you want to know more. :)

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